I, like so many others, keep getting told that this is in my head. I was diagnosed in 1996 after multiple miscarriages, but now the hematologist is gone and no one believes I have APS. (Even after using Heparin and aspirin to carry to term; the latest hematologist said it was a 'fluke' and had nothing to do with the Heparin) This hematologist did the required blood test and *surprise* the antibody didn't show up. When I was with the other hematologist who was so knowledgeable about APS (even back then) she said that the antibodies were hard to spot, and if a person had recurrent miscarriages (over 2 and near the same time) it was a sure bet. I had 4, and carried to term with Heparin twice a day and aspirin.
I've dealt with the fatigue for years, and all the other associated auto-immune symptoms: lymphocytic colitis, tinnitus, tingling skin, migraines and now, the unbearable joint and muscle pain and unbearable fatigue. I am on no medication and am at the point I will fly to freaking London. I can keep it together most days but there have been days lately where the foggy brain, the fatigue and the pain knocks me out of life for a couple of days. I am an art teacher and a single mom and need some energy/pain relief/help.
Has anyone been to St. T's from overseas? What is the wait time and more importantly, (GULP!) what are the costs incurred?
Many thanks,
SiveinVan
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siveinvan
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I would suggest that you get all your records for the period and see if in fact you every had APS. The blood tests by the first doctor would show this.
Hi hun, yes people over seas have been to St. Thomas. Wouldn't know the costs tho' I am under the NHS & dont go private (not enough pennies!)
But like the advice above mine..... before you go & spend lots of money buying a plane ticket & putting yourself at risk without medication too!!....ask to see your records & track it back to see if there was any trace of APS mentioned...& if yes ask to see a specialist that will understand APS/Hughes....if they dont..... tell them to look it up!
If no ask to be tested anyway...you are in your rights to be tested if you ask.....
You need to stress your concern to your gp....if all else fails give your doc' St. Thomas' phone no. & see if they can give your doc' some advice to go in the right direction with all this.
I hope you get listened to....keep positive & stand your ground...keep us informed & we'll help where we can. e.g. phone no's, advice etc.
Yeah I don't think many people, doctors included know anything about APS. Where in Canada are you from? I was recently diagnosed and have not seen the specialist yet but I have been referred to a hematologist that specializes in APS. I have to go on a bit of a road trip to see him so I hope he is worth it. My appointment is in July I'll let you know how it goes. I'm frustrated too. I think going to the ER is a waste of time no one listens or cares they think ur nuts. A trip to St Thomas would be great but it's way out of the budget for me. But I am curious about the cost too.
I'm in Vancouver. The original records seem to be long gone, and I actually located the original, brilliant hematologist (who has now gone into public politics LOL) so will work first from that angle. Thanks for the encouragement, Sue. It just takes persistence and I am that. @SassyOne, where are you in Canada? If you are in Vancouver, let me know.
OMG...I have had the exact SAME issue. I was diagnosed 22 years ago and there are NO records as they destroy them after 20 years!! This year my aPls were negative and for the life of me...even my doc who knows I have APS because I have been treated for it for 22 years...he told me that if I can go back to a doctor who KNEW i had the anitbodies I would be better off because it would be a hard sell without those medical records! UGH!
Southern Ontario. I was referred to a Dr. Kovacs in London he's a hematologist, I can't find much info on him so I'll have to go and hope for the best. I just had my appointment moved up 2 weeks but i have 6 weeks left to wait. Good luck. Everything seems to take forever here. It shouldn't be this difficult.
Sive, why do you think you have APS? Did you have positive blood work done by your other doc?. I have never heard that if you have 2 miscarriages then you probably have APS. I know a lady ( Camilla) who had had 9 miscarriages and they still call them flukes, as all tests have been normal.
I'm in the UK. St T's is an NHS hospital so I don't know anything about how they would charge for overseas visitors. I have seen Professor D'Cruz on the NHS who I think is great and is so thorough. Professor Khamashta (not sure if I spelled his name correctly!) is also said to be very good. Both of them also work at London Bridge Hospital along with Professor Hughes. It is a private hospital so anyone can go there. I did pay until recently to see Professor Hughes and he had had a patient fly in from South Africa to see him that morning. I saw him a year ago and the consultation was around £195. When I was diagnosed in 2008, he did run tests and the total was around £800. I don't know if this is of any help and good luck. x
I just heard back from London Bridge and Dr. Hughes suggested one doctor in Canada: Dr. Paul Fortin in Quebec. Ironically, it costs more to get to Quebec than England! KJay, I may be having tea with you at some point!
I have heard so many great things about London Bridge that it almost seems worth a trip. The other one Dr. Hughes mentioned was Hospital for Special Surgery in New York but he didn't say who I should see.
Renae: the hematologist at our Women's Hospital was doing a pilot on women with multiple (over 3) miscarriages. She diagnosed me but said the antibody had only showed up (if I remember correctly; it was 1995 or so) once out of a myriad of tests. She had a strong belief that the majority of women who miscarried over 3 times were probably positive for the antiphospholipid antibody and that this was even more likely if one had migraines growing up, digestive problems and/or other odd symptoms that no one could link to anything.
Also she said it was likely it was APS if the miscarriages occured at around the same time. I don't know what else to say, except the Heparin and aspirin led to my daughter, I continue having severe joint and muscle pain and tingling skin, migraines and fatigue. It seems too obvious to be NOT Aps but who knows? I guess I need reconfirmation. I know for a fact she told me I had it...
Was Camilla on aspirin and/or Heparin during any of the pregnancies?
So glad you heard back from Professor Hughes and are at last getting some positive leads. London Bridge is a great hospital. I know it is a long way for you and costly but I know how awful it can be when none of the docs take you seriously or even know what APS is. There are loads of people on the site as I'm sure you have seen who have Hughes Syndrome but negative tests so you are not alone and you have so many symptoms of APS.
Wishing you the best of luck and I hope you get manage to find a great doctor whoever you decide to see.
I am in Toronto and see Dr. W. Brien at Toronto General. Toronto Gen has a thrombosis clinic. One of the docs at the clinic Dr. Yeo also specialises in APS
Yes I have met Dr. Yeo. He was my initial consulting physician when it was discovered that I had bilateral PE and kidney infarction and have been seen by one of his colleagues - Dr. William Brien. I was also seen by Dr. Simon Carette at Mount Sinai's Rebecca Macdonald centre for arthritis and autoimmune diseases.
I have met Dr. Yeo. Terrible experience. Lab results were wrong for Acl IGM and he said all is fine. Went to London Bridge Hospital and test came back very high. Dr. Yeo came out with so many excuses like the method of testing. APS is life and death issue if not detected and treated. I don't trust Dr. Yeo at all.
O.k. I just got an email from Dr. Hughes who suggested Dr. John Esdaile (rheumatologist) in Vancouver, Canada as they have worked together and he is knowledgeable and familiar with Hughes Syndrome. YAY! Now to try to get in to see him...Will keep everyone up to date who is looking for someone in Canada...
Dr. John Esdaile, rheumatologist in Vancouver. AMAZING. Got all my records released, ordered 15 different blood tests, concurred that colitis, tinnitus, muscle pain and fatigue is all related. Will followup with in three weeks. So that's ONE in Vancouver, Canada if anyone needs....
Hi Siveinvan,
Glad to see that you discovered someone in Vancouver. Although this post is two years old I'll still reply. My Husband has APS, and had been treated in Montreal for twenty some years by Dr. Paul Fortin, who headed the Lupus Clinic there. Dr. Fortin no longer treats patients in Montreal, he now heads a research facility in Toronto. As far as I know he does only research now.
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